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Wednesday, January 12, 2011

Alone

Still doing great! Catheter came out yesterday. Blow-by oxygen was stopped (it was annoying and loud, with very few results). Swelling is greatly reduced, so her left extremities are moving more freely. She gets drips of milk by mouth, but is taking full amounts through the nasal-jejunum tube.

Her newest prescription: being held 30 minutes 3 times a day.

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Tomorrow she has a stealth MRI to map out Friday's surgery. There is no way to know what will happen after surgery, so we just have to wait and see.

Last night, I drove home by myself for the first time. I haven't been alone since Scarlett was first hospitalized on December 17. I have been too scared to be alone with my thoughts. Being alone means I am not distracted by conversation, and my brain takes off into the "what ifs". The long drive (about an hour in traffic last night) is too much for me sometimes, but it is worth it to go home and rest. The hospital is not at all restful. Even if I sleep, I don't relax.

I tried to go to the grocery store to find something to eat before I got home. I walked around the entire store, too distracted by the possibility of running into someone I knew. I have been so isolated I haven't had to really talk about Scarlett to anyone who isn't intimately familiar with her condition. Even casually at the hospital cafeteria, when someone asks "How are you?" and I am at a loss as to how to answer. It's too complicated to explain everything, so I just lie and say I'm doing well. Facing the looks of sympathy and consolation from close friends is much more difficult.

I left the store with nothing, and stopped for fast food instead...I'm eating like a kid of vacation lately, not taking the time to make healthy choices, but eating whatever sounds best at the moment. It's bad for my milk supply, which I am determined to keep up in some capacity. It is a huge struggle to pump regularly in the hospital, but I keep at it because I know breast milk is best for her, especially as her immune system is weakened and her little brain has so much work to do. We keep storing it in the freezer so that when she's ready, there is plenty. I don't foresee nursing working too well, though the occupational therapist wants me to try. It was always a struggle for us, so I don't know if Scarlett will have the patience to work at it.

I would like to THANK YOU to everyone who has sent Scarlett or us a gift. We have gotten some lovely gifts that are greatly appreciated. I don't know always who they are from, but I wanted to say how wonderful it is to receive them. We are so grateful to all the love and support being sent our way. We are photographing everything for Scarlett to see one day how loved she was throughout her treatment.

Ahhh what a great picture and a great moment! Keep up the good work Scarlett. You and your husband are an inspiration of strength. You staying strong helps her. She is feeding off the good vibes. Our whole family is rooting for you.

I couldn't help but to cry as I read your story about your baby girl. I can't imagine what you and your husband are going through. Your family is in my thoughts and prayers. I will pray for God to be with your sweet baby girl on Friday.

The whole being afraid of questions is normal whenever anything is wrong with your child. After Peyton's diagnosis of CP anytime someone asked how she was, etc. I froze. I didn't know what to say, but it does get easier. I'm so glad she did so well on her first surgery and I hope the second goes above and beyond all expectations. She's a little figheter & you are being SO strong for her. I'm not sure i'd be able to lift myself off the floor long enough to even breath.

I was so happy to see the picture of you holding your baby girl. That is the best med ever. I'm also so happy that you are making it such a priority to keep your supply up and keep providing her with your breast milk. I'm sure it is like gold for her little body. I respect you and am proud for you to work so hard at it and be so dedicated. I know how difficult it can be just to have to pump every 2 or 3 hrs let alone going through what your going through and having to do it in the hospital. I'm sure if she could say "Thank You mommy!" She would. The 2 of you are such great parents for this beautiful baby.

I wish I could give you each a huge hug and let you know that whatever you are thinking and feeling is okay, it is normal to feel out of sorts when dealing with so much stress.I am thrilled that you are able to hold your sweet little girl. Scarlett is blessed to have such wonderful parents. So many people all over the world are praying for her complete healing and your strength and comfort.

So glad you were able to hold her today. I can only imagine what you must be going through. Your strength amazes me. Scarlett is a fighter and I hope and pray this next surgery goes as well as the first.

I am thinking of you and Chris and Scarlett everyday, hoping and praying. We have never met, but I gain so much inspiration from you. Keep your chin up, you are doing a terrific job. This picture made me smile. (And don't worry about not eating well, there will be plenty of time for that later :+)Love and hugs,Kira from BBC November 2010

What a fighter!!! I love this little girl and am soooo happy for you to be able to hold her, even if for just a little. Babies are so smart, I'm sure this little princess knows just how lucky she is to be blessed with such awesome parents. Love Love Love from Tampa, FL:):)

beautiful picture i bet your heart melts to just hold her in your arms.Im thinking of three every single day. She's the strongets fighter that i've ever seen.Keep your head held high and remember to STAY STRONG. {{warm hugs}} and prayers sent your way.I follow this blog and your facebook everyday and everyone from facebook will be wearing red again on Friday in hopes for Scarlett.

So glad to hear it is doctor's orders that she be held like that, I am sure it is therapeutic for you two as well! Thanks for posting an update, I have been F5ing the screen like a mad woman :) Much love to you all!

I am so glad to hear that she is doing so well. It's exciting to see a picture of her getting to be held! I am praying that surgery will go well Friday and that she will recuperate as well and as quickly afterward as she has thus far. I truly believe that she will get to look at these pictures as an older child. Much love and many prayers.

That is the most beautiful picture, a mother holding her baby. Every touch helps her to heal and every prayer helps her to grow stronger. She definately has our prayers. We are pulling for her here in Layton, Utah! Stay strong Scarlet! With Love ...Amanda, Gavin, and Madison

A Mommy and Daddy's touch and your LOVE is the BEST prescription ever and is EXACTLY what Scarlett needs the most to gain strength and be completely healed!! Glad to know the doctors know this too! :) I cried tears of joy seeing this picture of you with your little butterfly, she is SO precious and you both have such amazing strength! God gave you a most precious gift of Scarlett and gave her an amazing gift of two wonderful, tender parents with the both of you! I continually think of the three of you throughout each day and I pray for a time when you can be home again, not alone, but the three of you again as a family. <3 It is natural to feel as you do and natural for people to be curious but you only need to do what is BEST for the three of you right now and people will understand--God will be sure of it!! I know these next couple of days leading to the surgery are going to be filled with a lot of different emotions- so we'll be praying that your anxiety is kept minimal and the love, joy and excitement you feel is multiplieda thousand fold!! Hang on Brandi and Chris...the finish line is getting closer and we're your biggest cheering section! Enjoy each snuggle with her..it's the best remedy for you and sweet Scarlett! Much Love and sending a multitude of blessings your way---The Resh Family in Fremont, CA~ LeAnn, Mike, Michaela & Landon

As the mom of a child who was born 4 months premature, I understand how you feel. Even though it's been nine years since my son was born, I remember like it was yesterday how surreal the world outside the hospital felt. Strangely, I felt more "safe" inside the hospital than out of it. I was so glad to hear that you got to hold Scarlett! I am sure that it has done wonders for both of you. My nine year old son, Ben (yes, he beat all odds and is a happy and healthy boy!), and I continue to keep Scarlett and your family in our prayers! -Bonnie, BBC August 2010

What a treat that prescription is! That is good for you all :) I am so happy so see you holding your little Scarlett and know that you both are feeling better from the simple act. You are in my thoughts and prayers.

I'm new to your story and am so in awe with you and your precious baby girl. She is such a little fighter with more strength than many adults I know, myself included. While I know this is extremely difficult, you always seem to handle yourself with such grace. Please know that you are all in my daily thoughts and prayers.

So glad for the update. About the nursing, don't sweat it if you can't get her to latch. You can successfully pump enough for her with the right pump. I have exclusively pumped for two children well over 12 months each. Sometimes it's what you have to do.Blessings to you all.

Your blog is the first place I go every time I pick up my phone.I hope that the love Scarlett gets from her family and So many people around the world will make her even stronger and she willCome out of this as a healthy girl.God help you. Be strong little kitten! Keep fighting!!Thinking on you all the timeJulia- Tampa

Brandi, your strength is indescribable! Yours and Chris' both! My heart breaks but leaps with joy every time I read an update. God gave you such a beautiful gift, and her name is Scarlett! You carry the weight of the world on your shoulders for your tiny baby girl. I don't know how you do it, but I admire you so much for your determination. I continue to pray for your beautiful butterfly and for the two of you to stay strong for her. I think her prescription: being held 30 minutes 3 times a day, is good for you too. Always thinking and praying for your family. x

Scarlett is so lucky to have such strong parents and such excellent medical care. I think about you all daily and pray for everything to keep going well. Keep fighting Scarlett, you have lots of support all over the world. Praying for you in Buffalo, New York.....

We are thinking and praying for you in Austin, Texas. What a great photo. Brandi - if you want a big mac and fries - go get it girl! Do not stress about what you need to get through all of this. I can't imagine trying to grocery shop and be healthy during this time. Make things as easy as possible for yourself. Its the least you can do. We love you and your family. You are doing an amazing job! Scarlett IS going to beat this. She is! Keep fighting Butterfly! All of our prayers are with you and the doctors.

You have such a little fighter in Scarlett. And I don't know how you are staying so strong for her as I would be a complete wreck! Keep it up, it'll only get better from here on out. Will be thinking and praying for you, Chris and Scarlett on Friday. Love coming your way from South Africa xx

I think and pary for all of you everyday!! I am so happy to see the new prescription is to hold your baby girl, what an amazing feeling that must bring to you both!! Lots of Love and Prayers for you all, GOD Bless : )

Prayers for your family. It is indescribable how incredibly much your story has touched my life. You are the strongest people that I know, and I've never even met you. Scarlett is an amazing girl who is meant for something big in this world!

Your picture is amazing, it is so nice that you can hold her and she can feel her mommys touch. Your family is in my daily prayers, good luck with the surgery Friday! May God watch over you all! the Franks Family